Aplastic anemia is challenging for both health care providers and patients to understand and explain. It can be overwhelming to be faced with the diagnosis of a rare disease like aplastic anemia, so it’s important to have clear descriptions of the disease information you need wherever you are in your aplastic anemia journey.
The resources in this toolkit will help you learn more about all aspects of aplastic anemia and manage your health care. There are printable patient information pages about disease basics, treatment options, managing side effects, and preparing for your medical appointments.
In addition, there are printable forms you can use to keep track of your treatment information and medical care – these include a symptom tracker, a medical appointment record, a blood transfusion record, and a chart for your health care team.
There are also short videos about aplastic anemia and links to many other AAMDSIF resources like webinars, booklets and fact sheets, a Map of Specialists and other informative content.
If you are a patient, you can select which of the aplastic anemia toolkit resources are most useful for you as well as for your caregivers and loved ones. You can also order a 3-ring binder that includes all of the patient information pages, disease management tools and AAMDSIF booklets and fact sheets related to aplastic anemia.
If you are a health care provider, you can print out the information sheets and share the other toolkit resources you think would be best for your aplastic anemia patients based on their diagnosis and where they are in their treatment journey. You can also order a “starter kit” in an expandable file folder that includes multiple copies of all patient information pages, disease management tools and AAMDSIF booklets and fact sheets related to aplastic anemia.
Downloadable pages about disease basics, Aplastic Anemia risk level, treatment options, side effect management and communicating with your health care team.
What is Aplastic Anemia?
Basic description of aplastic Anemia and how it affects your bone marrow and blood
Understand Aplastic Anemia and Overlapping Diseases
Learn more about the connection between aplastic anemia and other bone marrow failure diseases
Know the Types of Aplastic Anemia
Descriptions of the criteria to determine severity of aplastic anemia
Understanding the Symptoms of Aplastic Anemia
Review of the range of aplastic anemia symptoms based on low blood counts
Treatment Options for Aplastic Anemia
Summary of FDA-approved medicines for treating aplastic anemia and transplantation options
Managing Side Effects of Aplastic Anemia Therapy
Summary of the common side effects of aplastic anemia treatments and tips for managing them
Preparing for Medical Visits
Guidelines and suggested questions for making the most of your health care appointments
Forms you can use to keep track of your treatment information and medical care.
Form to record health care visits and notes
Blood Transfusion Record
Form to keep track of blood transfusions as part of aplastic anemia treatment
My Healthcare Team
Chart to record medical professionals, pharmacy contacts, patient support organizations and others involved with your health care
Platelet Transfusion Record
Form to keep track of platelet transfusions as part of aplastic anemia treatment
Form to record symptoms or reactions to treatment and medications that can be shared with health care providers
This 3-ring binder includes all aplastic anemia toolkit patient information pages and disease management tools along with related AAMDSIF publications. Patients can add their own content, such as medical records, appointment notes, and helpful articles. Order the complete Aplastic Anemia Toolkit for Patients on our Request Educational Materials page »
This “starter kit” in an expandable file folder includes 10 copies of all patient information pages and disease management tools along with related AAMDSIF publications. Health care providers can share the Toolkit resources with patients as appropriate for their stage in their Aplastic Anemia journey. Order the complete Aplastic Anemia Toolkit for Health Care Providers on our Request Educational Materials page »
Aplastic Anemia Patient Guides and Fact Sheets
Free educational booklets and fact sheets which can be downloaded or ordered for mail delivery
Aplastic Anemia Disease Information
AAMDSIF website information includes aplastic anemia causes, symptoms,
diagnosis, types and treatments.
AAMDSIF Webinars on Aplastic Anemia
Links to upcoming and on-demand webinars on aplastic anemia and related topics
AAMDSIF Podcasts on Aplastic Anemia
Listen to interviews with leading aplastic anemia experts
AAMDSIF Hybrid Patient and Family Conferences
Learn from leading experts around the world about aplastic anemia
Find a Specialist
Interactive world map for finding aplastic anemia specialists
Aplastic Anemia Resources
Comprehensive list of resources for various types of support